As well as being Mother’s Day, May 12th is also
the anniversary of the birth of a famous and admirable woman – Florence Nightingale. I’m sure you know the story of the way that
she went out to help with nursing the wounded injured in the Crimean War. In 1860, Nightingale laid the foundation of
professional nursing with the establishment of her nursing school at St Thomas'
Hospital in London, the world’s first
School of Nursing.
Nightingale became chronically ill in her mid-thirties with
a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)-like illness. She
was often bedridden for the last 50 years of her life. Despite suffering from a
debilitating illness, she managed to found the world’s first School of Nursing. Because of this, May 12th has
been designated as International Awareness Day for Chronic Immunological and
Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic
Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf
War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).
I don’t talk about this much – in fact, I’m not sure whether
I’ve mentioned it before, but ME/Chronic Fatigue Syndrome is something I’ve lived
with for years. I can recall almost exactly the time it started to affect my
life. I had glandular fever and I was
really struggling. You need to rest, the
doctor said – lots of rest. Inset hollow
laughter here. I had a two and a half
year old son – active, intelligent – demanding.
A husband who was dealing with a new job, often working teaching evening
classes, we’d just moved house so my
chances of ‘rest’ were limited. I didn’t
know then that this sort of situation was the perfect seeding ground for
ME/CFS.
There was no such diagnosis possible back then. ‘ME’ was not recognised – and of course was
known as ‘Yuppie Flu’. Some doctors
refused to recognise it as an illness at all. I remember one doctor who told me
that I either admitted I ‘just’ had
depression - or he would refuse to see
me again. Guess what, I left that practice and turned my back on him. I was
depressed because I was ill. Not ‘pretending’ to be ill because I was
depressed. The hardest thing in those days was the seemingly endless shuttling from one doctor to another, the tests for this, that and the other in the hope that
someone could tell me what was wrong. And being told it was all in my mind.
These days there is a blood test that shows problems that
create ME/CFS which is a great help. The
condition can also often lead to the
added complication of fibromyalgia. Another illness that some people refuse to
admit exists. I have acute fibromyalgia as well as the ME and at times it can be very unpleasant
indeed.
The main symptom of CFS/ME is feeling overwhelmingly tired
and generally unwell. Symptoms vary from person to person, and the severity of
symptoms can vary from day to day, or even within a day. This fatigue doesn't go away with rest or sleep. This can
make it difficult to carry out everyday tasks and activities.
Other symptoms of CFS/ME include: sleep problems, such as insomnia, muscle or
joint pain, headache, a sore throat or sore glands that aren't swollen , problems
thinking, remembering or concentrating , flu-like symptoms, feeling dizzy or
sick , fast or irregular heartbeats (heart palpitations)
But - people say when
I tell them I have ME - you write books, you teach, you travel. Yes
I do, because I refuse to give in to this thing. I do things that matter to me –
even though sometimes after a journey I’ve made, a course I’ve taught or a book I’ve written, I need time out to
recover.
Why mention this now? Well, really because I’ve seen the
posters and the messages, how people are talking about International ME Awareness Day and I think it’s important to ‘come out’ – and acknowledge
this problem. Because ME is an invisible disease. You can’t tell from someone’s
appearance whether they have it. You can’t see if it’s a ‘good’ day or a day
when the symptoms have spiked and someone is feeling very ill indeed.
Personally, this last year has not been a good one. So writing has not been good either. People
have started to ask questions about the lack of new books from me – so I
thought International Awareness Day seemed like a good day to talk about one of
the reasons for that.
I know there are so many others who are dealing with this
illness. They have good days and bad days.
Some end up in wheelchairs. Some
are housebound. I know I couldn’t do as much as I do without the loving support
of my husband.
So I just thought I’d do my bit to raise awareness of this
problem. It’s one that so many people live with as ‘normal’ but because it’s an invisible disease so you might never
be aware that someone has it.